Autism awareness month has been overshadowed by recent news events. The blue glow of landmarks and skyscrapers has faded away for most Americans. Even those of us touched by autism have put aside the month's label for the day-to-day reality of caring for, helping, loving our children.

Last week was our April vacation here in our Connecticut town. That meant long days of
downtime, which is always difficult for my girls, who depend our their routine. Bella, my youngest, kept handing me her purple knapsack. And off we'd go to look at the calendar and re-count the days until school was back in session. Cue Sesame Street's Count Von Count, a Stagliano entertainment staple, "That's three! Three more days until school starts! Ah! Ah! AAAAAAAAAH!"

My husband and I have tallied 37 cumulative years of caring for kids with autism in our home, if we use age 3 as the starting age for each of our girls. 37 years of facilitating, guiding, dressing, undressing, feeding, cutting food, bathing, toileting (that's mostly completed I'm thrilled to report) micromanaging virtually every aspect of the girls' lives - not because we are helicopter parents - it's simply what's required to keep them alive. I wish I could tell parents of younger children on the spectrum that life gets easier as the kids grow up - but for us and for most of the families I know with high school age children - it's getting a whole lot harder. The gaps of early elementary school turned into chasms in middle school and then canyons in high school and in "adult life?" The current programs available expect my kids to live in a parallel universe of managed care as if they leaped from childhood to advanced old age in the blink of an eye. (Won't happen.) It's a harsh reality rarely spotlighted by blue lights.

But.... all is not lost. Never. That photo at the top of the post? That's the showcase at the entrance to our public high school. And that pretty girl holding the Martha Speaks book? That is my beautiful daughter Gianna. She is 16 and considered a sophomore. The book she is holding is for a third grader. But take a look - our high school is saying,"Hey! This terrific kid is a member of our community and we are as proud of her as we are of our honors student who is going to Harvard in the Fall."

When Gianna's teacher sent me the photo, I just sat for second and took in the huge message it sent to her classmates, her schoolmates, the teachers, staff, everyone who walks by. I'm proud of our high school for honoring Gianna where she is - and for who she is.

I suppose the showcase is about acceptance, a word I usually abhor. Today? I accept it. Now to turn Martha Speaks into, "People with autism speak."

Comments

You can follow this conversation by subscribing to the comment feed for this post.

Kim,

Thank you for sharing this. Belonging is what we all long for and the one reason we fought for inclusive services for our son. Many thought he didn't belong, but the majority embraced him.

This is symbolic of much more as well and so important for everyone in that school, as well as Bella, to realize.

You're very lucky to have such an embracing community and naure circle of support developing for your girls. It is essential for their future quality of life. This is an example that should be modeled by many and I'm so, so glad you've shared it.

I love it! Besides your daughter looking absolutely gorgeous, she also looks so cool, calm & content-- whether she actually is or not, IDK but in this photo, it comes across that way--that smidgen of a smile is just perfect! Future model? Haha
Being a teacher and an autism mom very involved in my 7yo son's school, I knew these pics had to be in a display somewhere in the atrium of the building as part of a school-wide project to promote READING. (We had Reading Week in my sons school the first week of March.) I didnt know that young lady was one of your daughters. I'm going to be honest w/ u, not knowing the story behind the pic (which is how I first looked at it before reading) it would not occur to me that this young lady has autism which is why she is holding the juvenile book "Martha Speaks". At first I thought, she is probably holding that book to show the importance of reading to young students--she is representing how teens can be mentors to lil kids by spending time reading popular kids books to them. Then I thought... Or maybe these pictures are of students & teachers that were asked to hold their favorite childhood books or books that symbolize the first time they encountered a love of reading.
Once I read your post and then understood the story behind it, I got the chills bc this is awesome!!! Kudos to ur daughters school! They must be so proud of her and the level of pride in u & ur husband--thru the roof! But u know who this has the most impact on? Gianna. This must have made her feel so included. Imagine what she thinks passing her pic on the wall everyday--what a boost to her self-esteem! I know stuff like this is huge for our kids, from what my son told me about a similar experience. Last month his reading wk project was a book report on a quilt square we worked on at home for a wk and then the teacher made a "blanket" with all the quilt squares. He couldn't wait to tell me how one of his classmates complemented it--"Billy said he liked mine the best!!" as he jumped up & down. Our kids care about these things--it's a big deal! So glad u can share this story with the world--it's a big deal!!!

What a beautiful girl!! What an amazing husband! You and your husband clock hours, and that isn't always the case. Many times it is the mother alone. I still have my fingers crossed for you that there will be a breakthrough that might help one or all of them.

She is a pretty girl, Kim.
I am sorry it is for autism awareness and not that she is headed for --- who cares if it is Harvard they break you up with their huge prices, and in the end it is iffey if they get a job-when they get out

Kim - although I also am not a fan of "tolerance", I am a fan of acceptance and recognizing every human being for who they are. You and your husband deserve a quiet moment to just stand in front of that poster and be proud and happy. Our daughter returns to public school next year after three years in an autism focused private school - we can only hope she may be accepted and honored for who she is. Thanks as always for sharing.